Observations from Rare Disease Day

By Jeremy Bennett, Community Partnerships Manager

Rare Disease Day was on February 28th, but many states hold advocacy events throughout February, March, and April. I was invited by our Georgia Support Group Leader, Kim Harrison, to attend the Rare Disease Day event on February 15th at the State Capitol in Atlanta. What follows is an account of my experience.

Kim and her husband, Brian, picked me up from my hotel in the morning and we made the drive to the Capitol. We were fortunate to find parking nearby, but I soon learned that ‘nearby’ is a relative term, as we had to walk around to the back of the building to access the only wheelchair accessible entrance. Watching Kim navigate steep sidewalks, narrow doorways, and small elevators was a constant reminder of the need for better accessibility.

We made it to the designated area and began to set up our table for the event where I was introduced to two representatives for the National Organization for Rare Disorders (NORD), Kristen Angell, Associate Director of Advocacy, and Beth Nguyen, RN, Georgia Rare Action Network Ambassador. NORD promotes Rare Disease Day and these advocacy events. I would recommend visiting rareaction.org to learn more about these events and view the schedule of upcoming Rare Disease Day events in places like New Jersey, Nebraska, Alabama, Texas, and many others.

I was also introduced to our Georgia Support Group members. My favorite part of my job is getting to meet the people in our community. I went five years before meeting another person with transverse myelitis, but during Rare Disease Day I met Shawn who was diagnosed in the 1980s and just attended his first support group at the beginning of February! It’s never too late to get involved, and the power of being in the same room as people who have also lived with a rare disease was on display throughout the day.

Dr. Erik Fisher gave an impassioned speech, and the people in attendance filled the halls of the Capitol with their voices, demanding to be heard by the politicians on their way to meetings. One such person, Representative Sharon Teague, spoke about her work with under-served communities. She said she’s always had someone on her staff that was either deaf, blind, or had some sort of disability. She was invited by her intern, Rasheera Dopson, who is a motivational speaker with a rare craniofacial condition. If only more representatives followed Teague’s lead, the rare community might not have to yell as loud as Dr. Fisher urged.

Later, Kim was asked to speak and generously gave her spot to me, so I talked about the work SRNA does. But the last words of the day were possibly the most powerful. They came from Beth’s young daughter who talked about how her mom is a hero. I agree. After listening to the stories from those in attendance, I can say there were many heroes there that day.